I don’t know: three words we might not be saying enough

New Zealanders are reeling today after the deaths of 29 miners trapped in a coal mine on the rugged West Coast of New Zealand. We have watched this drama unfold over the past five days. We have seen media conferences and we have watched TV footage. And one of the more frustrating aspects for families has been the refrain “It’s too dangerous to enter the mine.” The key player in the public face of this disaster has been Peter Whittall, CEO of Pike River Coal Mine. His ability to answer questions honestly, calmly and with dignity has been a constant source of wonder. What he must be feeling now can’t be put into words.

Throughout this tragedy, the words ‘I don’t know’ have been spoken often. I think these are some of the bravest words anyone in Peter Whittall’s position could utter. Under intense pressure to speculate and to give answers, his ability to keep saying ‘I don’t know’ is something I hope to learn from. To say ‘I don’t know’ is to be honest, transparent, human.

I read Body in Mind’s post about treatments for back pain, here, in which Neil O’Connell points out that, despite a wide range of treatments – and some people receiving no treatment, while others have placebo – the trajectory for low back pain is pretty similar no matter what . David Colquhoun commented on this post saying that “I often think that it would be better for pain specialists to admit a bit more bluntly that there is very little they can do in many cases.” I feel it can also be seen as an honest and humble response to a very complex problem.

In response to David’s comment, Neil responds saying “Ben Goldacre said something about how the process of rational disinvestment from failed treatments is roundly ignored and ulitmately there is the human element that pain medics, physios, and quacks (even well meaning ones) all find it hard to do nothing.” This resonates for me. We don’t really know what to do for back pain.

While the next commentator says “But where does that leave me with the patient with back pain I’m seeing tomorrow?”

He has a point. I’m working with a group of people on our three week pain management programme. Each one tells of the time when someone said ‘I’m sorry there is nothing more we can do.’ Each one identified that it felt like a personal rejection, a personal failure. And one participant said ‘You’d think medical science would have found a cure by now.’

It’s incredibly hard to hear that there is nothing that can be done to take pain away. Or that we don’t know what works or why it works. Or that we don’t know why something happens.

Neil’s response to our commentator saying ‘what do I say to my next patient?’ is pretty good, I think. He says “the clinician working in back pain has … to be thorough in terms of diagnostic triage – spot the red flags and specific pathologies. Beyond that the evidence is convincing for keeping active, not going to bed etc. After that advice an evidence based treatment discussion might go something like “back pain is poorly understood but we know that it’s benign and that if you remain active your prognosis is really very good. We have a few additional treatments that appear more helpful than doing nothing but we can’t be sure that they are doing what they were designed to do and over the long term, our best evidence tells us that they are unlikely to have a big influence on your outcome.”’

As he puts it, clumsy – but evidence based and honest.

I listened yesterday to the participants on our programme talk of the roller-coaster of emotions as one treatment provider after another tried a new way to get rid of pain. One person said that when the medical people finally admitted that they didn’t know what caused the pain and there wasn’t any other procedure to do, it was the most enormously gutting experience – but at the same time, by doing so, this participant now feels it’s time to start the grieving process, stop looking backwards and begin to move on to living as well as possible. In other words, it was only once the ‘I don’t know’ and the ‘I can’t do any more’ happened, that it was possible to begin to accept and assimilate the permanence of chronic pain.

And in those same words that Neil quoted: it ain’t what you do, it’s the way that you do it. Maybe saying ‘I don’t know’ and ‘I can’t help you’ needs to happen more often, and happen with humility and gentleness.

I asked the group whether this meant they had lost hope. They were all pretty clear that this is not what acceptance means. There may be something else out there – but by and large they’re no longer searching for it. If it happens, it happens.

While hope of survival is now gone for the families of the Pike River miners, and they have the incredible sadness of never having them come home alive, they can now move from that suspended state of ‘what if’ that they and everyone else in New Zealand has had over the past five days.

Peter Whittall acknowledged that he didn’t know so many things in the course of this disaster. He was honest enough to admit that, and in doing so, gained my respect at least.

In back pain, and in chronic pain, there is so much that we don’t know. I do wonder if we need to say this more often to the people we are trying to help. It might not be a pleasant thing to admit, but it is honest. And maybe by admitting that we don’t know what will help, and that there may be nothing else ‘out there’, we would do our patients a favour too, by letting them put a line under that period of stasis, of breath-holding, that life will ‘return to normal’. This may start that process of working to accept, however difficult, that life is not the same any more. In doing so, we allow people to start grieving, then building a new ‘normal’. If we say this with caring, and stay with them through the process of grieving then work with them to build the new normal, we will be doing the most incredibly important work we can.

My heart goes out to the miners, the families of the Pike River miners, the CEO Peter Whittall, the police and other emergency teams, the health care workers, the media and the people of Greymouth and the West Coast. It’s time for grieving now. We don’t know why it happened, and we are with you in this too.

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6 comments

Many thanks for such kind comments Bronnie. I think that acknowledging uncertainty is a key professional duty. As for Mr Whittal, I heard him on uk radio and his honesty was impressive. Such a dreadful thing to have happened.

Sort of. At least, the patients need to know that the doctors do *believe* them about their pain, it’s just that chronic pain management is tricky when there’s no discernable cause for it. I have a friend who just about went to pieces because she assumed the doctor she went for with hand pain thought she was a hypochondriac because he gave her no further tests and told her ibuprofin (which wasn’t helping) and not to give up activities that had become too painful.
And my husband, with fibromyalgia, got told there was nothing they could do and sunk deep into depression until he found a doctor who did some of the more experimental stuff and gave him shots that lightened the pain. Now, in a different climate, he doesn’t need the shots.
Giving patients no hope does them no good. At least suggest maybe support groups for pain, helpful exercises. Ask about anything else that bothers them. I get low back pain because of asthma– my muscles work harder when the air’s got irritants, resulting in muscular fatigue and tension. But I’d have never connected the two if I hadn’t been given a handout on secondary asthma symptoms after that was diagnosed.

You make some good points – people do need to know that health providers believe them even when they can’t (a) identify a ’cause’ and (b) ‘fix’ the problem.
I think there is a difference between saying ‘I don’t know’ or ‘I have nothing to offer from X, Y, Z position’ and the points I hope I was making that it is possible to live very well despite experiencing ongoing pain (I hope I’m a living example of this!). I also think that patients (and we are all patients at some point in our lives) need to be careful not to misinterpret or overinterpret what a health provider is saying. How did you friend decide the doctor thought she was a hypochondriac, and did she discuss her concerns with her doctor? This is where health literacy comes in – being able to discuss health management openly with health providers, recognising that we are equal partners in our own healthcare.
As for fibromyalgia management – to date the evidence only supports the use of certain groups of antidepressant medication, the gabapentin/pregabalin type of meds, and self management. It’s the latter that seems to me to be the most important, and the area that needs to be emphasised by doctors. It’s also not always the most popular recommendation – and people often need help to develop and employ the strategies!
Thanks for taking the time to comment, it’s great to know my posts stimulate thought and discussion!